Hemiparesis in Children: Camp and Support

I. Introduction

For my ethnography, I chose to help with a constrained induced movement therapy camp (CIMT)

held by Primary Childrens Rehab Bountiful. CIMT is used to treat hemiparesis, slight paralysis or

weakness on one side of the body. This condition can be due to many causes such as cerebral palsy or

stroke. Most causes occur before or at birth and is caused by brain damage. A large part of CIMT and

this camp is casting the stronger arm so that participants cannot use that limb as much as the weaker

arm. Each group met for three hours, twice a week over a two-week period, for a total of twelve hours

of therapy.

I chose this group because I am interested in therapy as a career. CIMT has been shown to help

improve movement and I was curious on what a camp like this would be like. Using both arms in

most activities is common for majority of the population and I wanted to know what it would be like

to use a weaker limb and what type of activities that would involve.

My expectations were to learn more about hemiparesis and its causes. This would occur by assisting

an occupational therapist lead a group of children through camp activities. Including crafts, cooking,

therapy animals, games and obstacle courses. It was a culture shock on how much the weakness in

one arm affected their everyday life. At times it was difficult to know how to help them with tasks,

while still having them do the work.

Literature Review

There have many several research studies that have shown improvement in motor control following

CIMT treatment. The goal of the camp was to not only help improve movement, but to measure pre and

post test scores to add to the current literature. Page, Murray and Herman found that following similar

treatments improvement in motor control of the weaker limb was retained after three months even without

any further treatment (2011). Another study by Chen, Chen, Kang, Wu, Chen and Hong found that
participants who were given a home based constrained induced movement program improved more than

participants who used traditional rehabilitation methods (2014). In both studies participants had their

stronger arm bound so that they primarily used their weaker arm and showed improved movement

following therapy.

Methods

Methods that were used while working with the CIMT kids are consistant with common ethnography

methods over eighteen hours of camp and include fieldwork, direct observation, participant observation,

mapping, and informal interviews; with a primary focus being on direct observation and participant

observation. Fieldwork was conducted by immersing into the camp and helping the occupational

therapists run the camp to gain a better understanding of children with hemiparesis and treatment. Direct

observation occurred during the parts of camp that I could not participate in, such as the removal of casts

and during game time. During these times, I could observe activities that the kids had to use their weaker

limb, but could not actively participate. Participant observation was used during obstacle courses, during

cooking and crafts during which I would help the children complete tasks while still making sure they

were doing the work. During this time I got a better understanding of the extra help required to complete

tasks like pouring a heavy gallon of milk when you only have one strong arm. I was able to use mapping

to better understand the physical space that they camp was held in. A clinical setting like this is common

for these kids since they spend years in therapy to gain the use of their affected arm. During their regular

therapy sessions, they do similar activities and they are a common part of their everyday life. Finally, I

conducted informal interviews with key informants, such as the occupational therapists and the parents.

This allowed me to learn more about the daily life of these kids and the causes of their hemiparesis.

II. Body
 The CIMT camp was its own little community and holds its own culture. Like other cultures it is

made up of many elements such as class, language, economics, ethnicity and nationality, families,

power and politics, gender and creative expression.

Class and Inequality

Class is a system of power based on wealth, income and status that was observed within the group over

the course of the camp. The CIMT camp is held within an area that is part of a class system with each

member of the camp belonging to the middle class with the ability to move into a higher or lower class.

From information available none of the children come from a low SES family and were able to afford the

three hundred dollar camp fee that is not covered by insurance. For some families this was easy to cover

while others mentioned that it was expensive, but doable and worth the cost. Not much is known about

what their parents do for a living, but all the moms stay home with their children which is an indication

that their husbands make enough money for this to be possible. None mentioned of holding a job

themselves and discussed getting together in the future with each other so that their children could play

together again. Prestige is also difficult to determine without knowing specific family dynamics.

However, some of the moms wear nicer clothing which is often associated with a higher level of

prestige and wealth. For example, one mom has a designer name brand hand bag that she brings with

her each time, while others use cheaper bags and attend in workout clothes. The kids themselves all

wore the same quality of clothing often consisting of shorts, a t-shirt and sandals. One of the boys often

mentioned that they had a nice house on the hill and was often a leader of the group during times

where the activities were not as structured. This is different from other parts of the world where

everyone is equal and given equal opportunities or castes systems where they are born into a specific

group without the ability to move up or down in the system.

Communication and Language

Language is the system of communication that uses symbols, such as words or gestures, that are

organized according to certain rules. These are made meaningful by a group with a collective history and

culture. Due to the focus on therapy techniques and on the activities that are aimed at strengthening the

hemiparesis limb the kids and parents of the CIMT camp have their own way of communicating. Jargon is

mostly used with parents and the OT and is the medical information that pertains to diagnosis. This

includes the use of medical terms such as hemiparesis, specific parts of the brain, stroke in utero and types

of treatment. These treatments include occupational therapy, splinting, which is using cloth immobilizers

to help hold one arm still or a cast made from soft fiberglass material that could later be unraveled. Since

their stronger limb is casted gestures are done completely with their weaker limb and many try to find a

way around using their weaker limb too much, such as having their mom hold their cup for them while

they drink. Examples of gestures include pointing, gripping, drawing, using utensils for both writing and

food. When talking if they use their hands it is usually their weaker limb since their stronger is in a cast,

although many would try to use their casted arm for assistance to hold something steady or to give a

thumb up since the thumb is casted in that position. Additionally, they complete tasks such as games,

crafts cooking activities mostly with their uncasted arm and can use their casted arm to assist their

stronger arm. For example, when doing crafts they will use their weak hand while using their cast to

steady their hand or to push supplies around, or to hold the bowl while they stir the muffin mix with their

stronger arm. Use of space involves multiple areas of the clinic including the occupational therapy gym

that includes swings and toys, therapy rooms to do crafts and activities and the kitchen to do cooking

activities. They also gather in the waiting room where they wait for camp to start and begin interacting

with each other. In past years parents have formed support groups and bonded over similar difficulties.

Parents discussed home programs and good activities to encourage desired results.

Economics

Different cultures exchange goods in different ways depending on their economies. In some goods are

exchanged for a monetary value, while in the other cultures goods are exchanged for other goods. The
economic practices in the CIMT camp are comprised of balanced reciprocity, generalized reciprocity and

redistribution. At the time of the camp each participant pays a fee of $300 to participate and in return

attend camp to work on their weaker limb multiple times a week for two weeks. This is the balanced

reciprocity part since they pay for a service and then received the service. In this case they are exchanging

money for extra rehab treatment. The money goes through insurance and to those who manage money for

the main hospital. After it is redistributed to those involved in the camp, such as the occupational therapist

conducting the camp, the receptionists, managers and people who take care of the building. Finally, there

are examples of generalized reciprocity since the occupational therapist and the receptionists are

providing a service, but does not receive anything of value at the time. Later they receive compensation

for the service they provided through their paychecks that have been redistributed through the hospital.

The kids themselves often participate in bartering by exchanging one object, such as a game, for one that

another kid is in possession of. They also participate in generalized reciprocity when they would give

something to one of their friends in the group, such as the color of frosting they were using, and would

not get anything back until a later date, such as the extra chocolate chips at a later cooking activity.

Ethnicity and Nationality

Ethnicity is a sense of historical, cultural and sometimes ancestral connection to a group of people who

are imagined to be distinct. It is formed as an identity to organize themselves in relation to others who

they perceive as either culturally similar or different from themselves. The ethnic identity of the CIMT is

mostly American with a couple that are mixed between a couple of different cultures. This is shown

through their clothing which is typical summer clothing for this part of the US. This includes shorts, t-

shirts, tank tops, sandals or tennis shoes. Some have designs or logos for different companies on them,

For the boys some of the logos are athletic such as Nike and they occasionally wear athletic shorts. The

girls often wore pink/purple, skirts with leggings and had pictures such as mini mouse. Additionally,

phrases that they use of their view of certain activities shows how they think about things and perceive
them based on their ethnic identity. They use phrases from typical American English, such as calling

something cool, referring to popular culture such as Star Wars. Although the group is made up of many

different family circumstances I do not think that any of the participants participate in polygamy or

polyandry. Most come from nuclear, blended or single parent families with other siblings. They also

showed this through their class in the class system, by the mention of their moms staying home and while

their dads work outside the home.

Families

Families are all descendants of a common ancestor and are organized in a variety of ways, including the

popular nuclear family of Western culture. This type is comprised of two parents and their dependent

children. The children in the CIMT camp come from nuclear families that are made up of different

structures. Some are from homes with two parents while others come from single parent homes. Parents

in the group are married in a monogamous marriage and single parent families are formed from either

divorce, death or from having a child without being married. From what I have been able to tell none of

the families practice polygamy or polyandry. The children are accompanied by at least one of their

parents, grandparent or guardian while other siblings are left at home. There were a couple of times that

siblings came to camp and they were often older siblings. One of these instances involved a mom being

unable to attend the whole camp sessions so she sent her older teenage daughter to watch over her

brother. In some cases, the children do not come from a specific family and are a part of the foster care

system. Family was a central part of the camp with parents often mentioning other siblings or members

with encouragement to go show these other members what they had learned or created.

Power and Politics

Power is the ability to bring about change through action or influence. The power structure at the CIMT

camp is a state under the government of the United States. Most of the social norms and laws are
governed and enforced by the government, local leaders and the military. Within the camp itself the

power is closer to a tribe since the Occupational therapist is like an unofficially elected leader or big man.

She makes decisions for the group that parents and the children can or cannot follow. She is an unofficial

leader since she is the one that has the skills to run the camp and takes into consideration the ideas and

thoughts of the parents. Rules are the same for the rest of the clinic and mostly cover safety concerns.

Examples are when they can play on certain equipment such as swings and how many of them can be

doing a certain game of task at a time. These rules are communicated verbally with warnings and loss of

participation in activities should they choose to not follow the rules. Conflicts are discussed between the

children, parents and therapist by finding a solution that is most beneficial; although there have not been

very many conflicts within the group. Among the children themselves one boy is unofficially in charge

and majority of the other children follow his lead. This usually involves running around and getting into

activities they are not supposed to be playing with at that time. When there are conflicts among the kids

themselves they argue and then go straight to either their parent or the occupational therapist.

Gender

Gender is composed of the expectations of thought and behavior that each culture assigns to people of

different sexes. It is culturally constructed with ideas on how men and women should behave and feel. In

the group that I am observing there are six children total and five are boys. It is hard to see large

differences in gender and gender roles for this group of the camp since they are between four and eight

years old with majority of them being at the younger end of the age range. However, the one girl is

always dressed in colors and clothes that are advertised for girls, while the boys are in clothes that are

advertised for boys. When all the boys start to get a little out of control, their parents tell them to settle

down, while when the one girl starts to get out of control they tell her that it isnt how she should behave

or make the comment that she is just having a bad day. This shows how boys are expected to be rowdy

while girls are expected to be calmer unless something is wrong or bothering them. When we were

making a piata, there were different colors of tissue paper and color was never an issue for any of the
kids and one boy was upset that he did not get the pink. It was not a big deal for his parent that he wanted

to use a girl color and he was only not given the color since another child was using the color. The only

division of labor is that only moms have brought their kids to the group since they take care of the kids

while their husbands work, rights are not noticeable and for this age there are no big differences in

language/speaking patterns other than the boys speaking more quickly and louder than the one girl. The

boys take charge and make group decisions while the one girl goes along with what the rest of the group

has decided.

Art and Media

Art is defined as all the ideas, forms, techniques, and strategies that humans employ to express

themselves creatively and to communicate their creativity and inspiration to others. The group that I am

observing did not have a lot of use of body art. Both occupational therapists had multiple ear piercings

in both ears, while the parents didnt have any extensive jewelry. One used a specific piercing on her ear

to help with migraines making it both an expression of art by being a modification and a functional part

of who she is. Likewise, there were no visible tattoos and all their hairstyles were conservative with

natural colors. Many either wore their hair straight or pulled up in a ponytail. None of the children had

any body art. Some would draw on themselves like it was tattoo with a pen or marker. The children

wear summer clothing, such as shorts and shirts, that they are comfortable and show some of their

interests. These include mini mouse and Star Wars; none wear any jewelry or anything else that shows

who they are creatively. Part of the camp is making a craft at the end of each session. They are given an

example and a variety in supplies in a variety of colors. One of the boys called crafts too girly and

refused to participate in any of these activities. Instead he had his mom take him home early; he did

show his creativity through his pretend play and the stories he would tell about his stuffed toys. Many of

the others would tell the group about their art activities they would do at home, such as baking soda

volcanoes.
 III. Conclusion

The CIMT camp showed to have its own unique culture made up of various elements. Although

influenced by larger cultures and their social norms the children and their parents had their own unique

outlook. Over the course of the camp the children did show improvements in their abilities allowing them

to be closer to the larger cultural group their subgroup originated from. Using participant observations,

and direct observations helped to better learn about the culture by being a part of the culture. Knowing

about the difficulty of using one arm is different than trying to help someone do activities with only one

arm. Indirect interviews helped learn the causes of hemiparesis and how it influences personal identity.

My own ethnocentrism had an impact on how I interacted with the group, especially in the beginning. I

found myself looking for social norms and traits that are common in my own culture. Due to the fact that

this small cultural group came from the larger group that makes up my own cultural group. This made it

difficult to see how much having a weaker limb affects life. After interacting with the children and

learning about their own normal it was easier to let go of my own ethnocentrism and really observe the

culture. I learned just how important having two strong arms is and how much it makes life easier. By

having a medical condition, the group had a large impact on their personal identities and the identities of

their parents. They become a part of their own culture that is full of its own jargon, power system and

norms. This has an impact on the larger cultural group and shows how any medical conditions could

affect the overall culture and form their own cultural groups.

IV. Graphics
 Mapping Diagram for the clinic where the CIMT camp was held.

V. Citations

Chen, H., Chen, C., Kang, L., Wu, C., Chen, F., & Hong, W. (2014). Original article: Improvement of Upper
Extremity Motor Control and Function After Home-Based Constraint Induced Therapy in Children
With Unilateral Cerebral Palsy: Immediate and Long-Term Effects. Archives Of Physical Medicine And
Rehabilitation, 951423-1432. doi:10.1016/j.apmr.2014.03.025

Guest, K.J. (2017). Cultural Anthropology: A Toolkit For a Global Age. 2nd Edition. New York: W.W. Norton
and Company, Inc.

Hirsch, L. (August, 2015). Cerebral Palsy. http://kidshealth.org/en/parents/cerebral-palsy.html#

Page, S. J., Murray, C., & Hermann, V. (2011). Affected Upper-Extremity Movement Ability Is Retained 3 Months
After Modified Constraint-Induced Therapy. American Journal Of Occupational Therapy, 65(5), 589-593.
doi:10.5014/ajot.2011.000513